Parenting Autism

It's autism acceptance week. 

Again.

And I'm still here, wishing that autism truly was accepted.

I’m seeing workplaces trying, really trying to push autism acceptance week, bringing out the banners, shouting about accepting autism. 

Doing what they think people want to see them doing.

Then those making the noises go home and dust their hands of it, done for another year.

And… nothing changes.

I’m still seeing constant battles where my three children are concerned, and hearing of the difficulties that other parents still face.

You see, in our household, chaotic as it may be with a teenage autistic boy, and his two pre-teen autistic brothers, we function perfectly well, thank you and we wouldn’t change our beautiful boys for the world.

It's other people who make life hard for us.

And I say us, rather than them ( as in our boys), because, as a family, we aim to make their lives as problem free as possible.

You see, our boys go through all manner of appointments; there are the therapies (occupational therapy, physiotherapy, SALT) the consultant appointments, the orthotics appointments, specialist dentist, specialist optician. Then there are the educational barriers, which create numerous hurdles on a daily basis; the LEA, EHCP, school battles, be it a mainstream school or specialist provision.

And they get through it.

As a parent of a child with autism, you must become thick skinned.

You will attract stares and disapproving looks because your child is ‘misbehaving’ in their eyes.

We’ve had someone tie one of our boys shoe laces, but very loosely. He couldn’t stand the feel of the loose boots, but couldn’t explain the problem, so he took them off. He got told off.

We’ve had a teacher put another of our boys special boots in a cupboard on PE day, and left them there for two months until they were found.

We’ve had someone tell one of our boys off for talking in a baby-like manner. It's how he speaks when he’s trying to be brave and speak up about something important to him.

When out and about, as parents, we bite the bullet and take it as it comes. 

I could write about every struggle, every sensitivity, every issue we have encountered in our near sixteen years of living with autism, it would be a hefty novel… but each and every issue is caused by someone or something else.

The world is not inclusive yet, it is slowly improving, but there is a hell of a way to go yet.

So, each year, for autism awareness/acceptance (delete as appropriate) week, I say the following:

Everybody I speak to tells me they are aware of autism. 

Everyone I speak to tells me they accept autism.

Only those living with it truly understand autism.

#theshippeycampaign

A Reflection Of The Most Wonderful Time Of The Year

And just like that, another year comes hurtling at us. 

To me, life becomes a bit of a blurry mess of stress in December. 

It brings Christmas activities in abundance and constant use of the bank card from November. 

December comes and goes in the blink of an eye, only noted by the constant checking of who's going to be on strike when you need to post something, be somewhere using the railways or someone in your household falls ill, and potentially may require medical intervention.

All in all, I was the most unorganised that I've ever been, this Christmas, and the frantic searching for the six (yes, six, god love us) elves that miraculously turn up on 1st December, followed by the sudden realisation and panic that I'd forgotten to buy the advent calendars that said elves bring with them, was the sign of things to come.

Yes, a middle of the night trip to the supermarket in search of the chocolate delights wasn't in vain, when I found three, nut free (only one nut allergy amongst our rascals), dairy free, lactose free...and yes, it was confirmed...taste free (the elves were berated for bringing substandard choccy calendars this year)

The little elves also brought a note that explained the reason for them not having hats, was because of the strong winds as they passed over Iceland (the country, not the supermarket - apologies, Icelandic citizens, but our rascals would like you to pass on the hats to Santa if you come across them).

Anyway, as I said, the supermarket search for advent delights, also produced some Prime! Dear lord, my adrenaline was pumping so hard that my body thought I'd done a boot camp workout!

So, happy rascals, I had!

Well, having peeled and chopped and cooked and cleaned my way through December, with some added 'We wish you a merry Christmas" in various educational establishments, fighting my overheated self and two rascals through Christmas markets in school halls packed to the rafters with excitable kids, eating their way through e-numbers galore, disguised in candy floss, multicoloured popcorn, god knows what colour milkshakes. Of course, not forgetting  purchasing my weight in porridge and glitter, otherwise known as reindeer dust and dodging parents trying to caffeinate themselves to be able to do round two, Christmas eve was upon us.

The frantic chopping became more frantic, the peeling more urgent, the cooking never stopped...the energy suppliers were having a field day watching my meters spinning. 

Then came the sleepless night for the rascals, closely followed by the big day itself.

No sooner had my husband and I shut our eyes, they were prised open by our youngest rascal, who was sure...absolutely sure Santa had been, and really, really needed to check, but he really, really needed the other two rascals to check too.

Good morning it was, so up with the larks, on with the oven, the bin bag was out, and by the wee small hours of the morning, the toys were being played with, the turkey was in and I was trying to make my absolutely exhausted self look remotely presentable to our guests....that's our mothers.

Now, don't get me wrong, I do love a nice soppy Christmas movie, a glass of mulled wine and a big bucket of choccies. Christmas songs playing while we decorate the tree as a family and take nice selfies to share on social media. It's the perfect Christmas!

However, the lurgy hit the kids, they couldn't be bothered, we couldn't find half the decorations, we had the wrong plug for the fibre optic tree and the husband isn't awfully keen on mulled wine.

So, not one movie was watched, the mulled wine is still in the cupboard, the trees have now been put away, along with the dud plug (see next years post for a repetition of stress) I'm sick of the sight of mince pies and we have so many, even if we have one a day, it should see us through to September next year (best before dates permitting of course).

And it's the New Year...what happened to the bit between Christmas and New Year? I seemed to have lost it somewhere! 

So...happy New Year everyone, we wish you the very best of health, wealth and happiness for 2023!

From us both and our three rascals x

What A Feeling!

 Oh my giddy aunt!

Last night I finished writing the first draft of my very first novel.

I have just spent a few minutes reading that second sentence again. It's such a wonderful feeling.

Elation, excitement, motivation. They are just a few words I can use to describe the feelings I had. 

I loved writing this story, I really did, I love all of the characters in it, their personalities, their mannerisms, I lost myself in their stories every single time I opened my laptop, and I was excited to see where it took me. Believe me, I got some surprises along the way!

However, now the hard work starts...

I have hundreds of hours worth of editing to start. I'm really looking forward to getting stuck into it and fine tuning the book.

The thing I find hardest, and I did with the childrens book I wrote, is stopping and letting it go.

I'm a perfectionist when it comes to writing, and to bring a character and storyline to life in someone else's mind is my job. I want the reader to feel the emotion, to smell the cooking, to feel the heat of the sun on their skin even if they're in the depths of winter.

I kind of think of songs as I'm writing. For example, I start with The Carpenters and 'We've only just begun' and then Bon Jovi pipes in with 'We're halfway there...' then not long after that you've got Europe stepping up with 'Final countdown' and we finish up with Irene Cara and 'What a feeling'!

So, I embark on the next stage of my journey... lets see what songs come to mind through the editing stage!

Positive vibes sent your way from up here on cloud nine!

"We're (Just Over) Halfway There"....

 So, as I hum the famous tune of Bon Jovi, admittedly adding a couple of words, I am so proud to say I have topped the 40,000 word mark of the book that I'm writing!

I have had the most amazing run this Easter holiday and just four days ago, I had hit 30,000 words, so ten thousand in a few days is pretty good going!

I'm really enjoying this and I'm adding ideas constantly as improvement to the story line. The characters have found their own way in this book and I've let the story develop the around them, which has taken me down many different roads...some forcing me out of my comfort zone completely, however, a story has to be compelling, intriguing and captivating to keep the reader wanting more, so, that's the job of the person writing it, no matter how it makes them feel.

So, I'm still far from the ending, and to be honest, I'm not sure which way I'll be going with that either - it's a mystery to me at the moment!

I'm often asked which genre I am writing, well, I have a few on the go; two family saga/romance, a sci-fi, a funny, a childrens series (5 stories completed so far) and another children's series just started.

Watch this space and hopefully, soon I'll be announcing my finished draft...ready to go through it all again for editing!

Have a great day!

Kate

Autism Awareness Week... *What I want to tell you*

The 4th April marks the end of autism awareness week.

All week I've been planning to write a post. 

All week I've drafted and deleted.

We have three sons, all diagnosed with autism. 

We live with it twenty four hours a day.

Before our gorgeous boys were born, we were 'aware' of autism, but we knew absolutely nothing at all about it. We would hear that someone's little one had been diagnosed with it and we made the right noises and got on with our life.

Then, our first born came along....

Suddenly, our lives changed and we joined a special club. 

It's an epic roller coaster of a ride. To get on this ride and experience the ups and downs of a parent of children with special needs, you need to have:

1. A very thick skin
2. A hell of a lot of determination
3. The knowledge that you will succeed in getting what your child needs
4. A damn good support network
5. The ability to cut yourself a whole lot of slack

You see, the difficulties that you encounter come thick and fast and mostly daily. It's often hard to comprehend why certain situations occur, or indeed, why you are restricted so much. 

All you want is for your little person to experience the same things their peers are, it's just that it may need to be tweaked somewhat.

I could go on, and detail these issues. However, all three of our little people are so different from each other and experience autism in different ways. You know, just like us neurotypical folks do....we aren't all the same and we don't have the same experiences. We hold different opinions about what we like and don't like.

However, what I will point out is that it has been quite an eye opener throughout the pandemic.

I have heard people complaining about wearing masks, going crazy disinfecting everything, worrying that people were in their personal space and not observing social distancing, hating staying at home, or worrying about going out in public for the fear of other members of the public behaving in an unpredictable manner....

....it seems we've all had a taste of what some people on the autism spectrum experience.

This autism awareness week, I have deleted all of my drafts of how our gorgeous boys are affected by ASD, I have deleted a 'be autism aware' post. I choose, to ask you to think about lock-down, think about how you felt when you were restricted, think about how you felt as positive cases were rising and you were forced to live in world that wasn't certain, or comfortable and completely unpredictable, out of your control.

This is how I would like to raise autism awareness this year....just stop and think.

Kate

Get Ready For The Sugar Rush!

Hey parents, carers and guardians - it is Easter eve.

Are you ready?

No, neither am I.

Oh the joys of springtime are wonderful aren't they, in a non sarcastic tone, I really mean that. 

I adore seeing the new buds, the flowers beginning to bloom and the warmer weather. Everyone seems so much happier and the days seem brighter....even in lock down!

Then, just as you are revelling in the new 'spring has sprung' glow, Easter turns up.

Now, I'm not talking about religion here, that's not the post I'm talking about, I ain't opening that can of interweb worms, I'm talking about the enormous amount of chocolatey, sugar laden, E-numbered delights that are bestowed on our delightful children.

Nope. there are no words to describe how our next few weeks will be panning out.

I just know you feel my pain. I hide the treats. If they are in view, there will be all manner of household scaffolding erected in an attempt to grab a chunk of chocolate, and that's just from the adults!

In all seriousness, don't you think these overpriced, hollowed out, thin moulds of an egg are the biggest rip off? Children are lured to the huge boxes of their favourite treat, for less weight than a normal bar of said delight, and us adults are paying more than ten times the amount.

Except we don't do we? 

The damn Easter Bunny does...he's such a fantastic creature! So kind!

So, over the last few years, as our little munchkins have grown, we have reduced the 'eatie treaties' and  brought in trainers.

It works like a dream! A bit of chocolate in hand, trainers on feet and off they go, into the garden for hours on end. They love them,

but not as much as me and papa do!

So, here's wishing you and your wonderful families a very happy chocolate laden, hyperactive, sugar fuelled Easter!

Kate

Easy Like Sunday Morning...

And so goes the song...

However, other than when I hark back to childhood, and those days on holiday when all you need to do is secure your sun lounger with a beach towel...remember those days?..., I don't particularly find Sunday mornings easy. 

Sunday mornings consist of being hauled out of bed as per a school morning and standing at the hob, mixing eggs etc to make pancakes for the small people. I know, self inflicted, and boy am I looking forward to the day when the small people are flipping the pancakes onto my plate on a weekend. 

After clearing away the breakfast dishes, the dinner prep begins. I'm traditionally English when it comes to Sunday meals, and nothing, and I mean nothing can take the place of a Sunday dinner. Apart from the aforementioned holiday, when a salad, and wonderfully chilled glass of wine will do just grand.

Can you tell I'm missing my holidays?

After dinner, the great big clean up takes place. You realise how many pans you own when you cook a Sunday dinner and how many plates can be used in the whole preparation.

Generally, after the great big clean up, the clock is ticking, and it's time to prep for school the next day, and so out comes the iron, school bags, shoe polish...you get the general idea.

Then suddenly, it's tea time. Little hungry tummies start opening the fridge door. So, the kitchen benches fill once again with food stuff and Sunday tea is created.

After an exhausting day, little people need cleaning and settling into bed.

So, whoever said Sunday morning was easy, I'd like a word with them!

Kate